Saturday, November 10, 2012

Do you hear what I hear?

Max and Addie's hearing loss was actually the reason I started this blog, although most people probably do not realize that.  In May of last year, we got our first hint of concern when they failed newborn hearing screens.  Then in June, the completely failed their sedated hearing tests and we were told they both had profound hearing loss. I didn't post anything about in on Facebook and was very cautious about who I told or let my parents tell.  It was a very emotional thing for me, in a lot of ways more so than their kidney condition.  By October it was time to retest their hearing and begin the process for hearing aids etcetera and I knew I needed prayer and support and couldn't not talk about it anymore.  So I started this blog like a week before so that I had some way to do that.  It was too much for a facebook status and I needed something more open than a group email.  So I started a blog so I had somewhere to tell people that Max and Addie had lost their hearing.

And I did write about it in October and then of course Addie got sick and we found out about Max's brain and the blog became of the best decisions ever.  I had this place to share news, good and bad, and to share Addie's journey to transplant.  And because all of those issues took over, I don't think I've ever really written about hearing loss again.  This week we had a big meeting at the Center for Hearing and Speech with Addie's speech therapist so it seemed time to write about one of my least favorite topics, Addie's hearing loss.

First of all, we are astoundingly thankful that Addie really does hear so much more than we had originally been told.  After months of thinking that they heard nothing, we are still so thrilled that she knows so many words, that she can tell if we say touch your 'nose' vs 'toes'.  Without any hearing aids, her comprehension of words is really impressive. And given what we had been warned, we are just so thankful! I remember too vividly the day they told us about their profound hearing loss and I remember mourning for them living in a silent world.  I love music, I love hearing people's voices, I love sound so much that I hated the idea of them missing that. I am so thankful that we know now that they do actually hear a lot and when I see Addie dance to music or sing to a song, it makes my heart fill with joy.

And it is actually easy to not think about her hearing loss.  She responds to us and hears so much that you don't really notice it when you are around her.  But she is not talking so it's clear that it is affecting her.  But in terms of dwelling on it, I guess I have generally just avoided that because it is sad to think about for me.  On top of everything she has gone through and has to deal with, it just makes me sad that she also cannot hear everything.  And so I don't think about it a lot. 

The problem with just being happy she can hear and not worrying about the loss is that I haven't fought hard enough with her about her hearing aids.  And we have a lot of good legitimate reasons we have not.  To say we have a lot of other things going on is an under statement.  And of course I work and am not home that many hours a day.  So there are reasons.  And Addie has historically been pretty awful about wearing them.  So we have had a few good spurts of her wearing them but it hasn't been our biggest priority.

Well we had a big meeting with her speech therapist and the whole point of the meeting was basically to scare us into making her wear her hearing aids.  They really wanted to drive home how big of a deal hearing loss is and how much she is missing out on and how many problems it will cause if she does not wear her aids.  And then they revealed their fancy technology where they take her hearing aids and plug them in and get a log of how much she has been wearing them. And I totally felt like I was in the principal's office in trouble!! And I was such a goody two shoes nerd that I am not used to being in trouble!  So between feeling like I was being reprimanded and then feeling like it was being emphasized just how bad hearing loss is, it was not a fun appointment.

But, although I wished there had been more compassion and empathy involved, I will tell you that today Addie has had her hearing aid in for 8 hours! And I have replaced it any time she has pulled it out and done everything they wanted me to do!  Mainly because I'm scared of the log! And also because they did make their point- hearing loss is serious.  Addie does need her hearing aids to learn to talk and to develop properly and I do need to do everything I can to help her through this.  I will say that today was also an answer to much prayer because although I did push harder, Addie was actually way more agreeable about it and it was just such a good day with her wearing them.  I appreciate that God rewarded me for my diligence with her being extra sweet and good about it!

I understand that Addie's hearing loss is going to be a lifelong issue for her which does make me sad.  But I will still tell you that their are worse issues to have.  Because it isn't life threatening and given she has spent the last 2 years fighting a life threatening condition, that means everything.  And because it doesn't affect her ability to think, be independent and socially interact.  And given her brother has a condition that does... again, it puts it in perspective.  So hearing loss is not a tragic problem to have.  And we are so incredibly thankful for what she can hear.  And will not stop being grateful for that.  But we will recognize that it is important that we address her hearing loss and persist with her hearing aids and get her all the help we can.

At some point, we will also address some of these issues with Max.  We don't really know what he can hear because we do behavioral testing with Addie now where she turns to tones and we cannot do that with Max since he cannot turn his head.  So it's harder to know what kind of hearing aids he needs.  And with his sensory overstimulation issues, we want to make sure not to put the wrong amount of amplification.  Additionally the Center for Hearing and Speech is specialized for working with kids for whom hearing loss is their main issue... they really are focused on helping kids who are cognitively normal but have speech problems due to hearing loss- like Addie.  Max would not be a candidate for their hearing school or speech therapy.  So it's a bit harder to know how to address his hearing loss in context of all of his other issues.  But we will figure it out one of these days.  For right now, we have plenty of other issues to worry about with him.

We would appreciate prayers that Addie does continue to wear her hearing aids and that her speech just takes off.  She uses signs and is so adorable trying to communicate with us!  We know she is ready to talk and we're hoping and praying with our new attitude and enthusiasm that we will see big improvements!

And to end of a happy note, here is Addie enjoying her new swingset at Nana and Papa's house!

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